Tuesday, February 16, 2010


An old post from my other blog...

Today I concluded a difficult case. I can't say that I "won" it because in my line of work, winning simply means that the right thing is going to happen. However, it will not happen without countless challenges and obstacles. Winning assumes there are losers and my ultimate definition of success is that there are none. In this case I believe I accomplished that goal. No one will take home hardware at the end of the day and there will be no post-race party nor a recovery day. However, the fact of the matter is that the reward is far greater than a finisher's medal and more powerful than a top ten finish.

I've been in this business for a long time, but some cases get to me more than others. Maybe it's because some hit closer to home... or maybe my frozen heart melts just a tiny bit when I meet exceptional children and their even more exceptional parents. Either way, I've been thinking a lot about Holland lately.

I think we each have our own "Holland"... a challenge that requires us to think and act differently than expected... be it a child who is differently abled, a medical condition or injury we deal with that affects how we live and/or train, a job that's not all it's cracked up to be, or a difficult family situation. Whatever your Holland is, I hope you stop to admire the Rembrandts, windmills and tulips along the way, even if they are hidden or off the beaten path, and find the beauty there.

"Welcome to Holland"
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, February 14, 2010


Lighting struck all around as they went riding with the top down. Soon enough the rain began to fall. He assured her they could outrun the rain. The first red light proved problematic in this respect, yet it was so utterly giggle-worthy that she couldn't help but smile... then laugh...the kind of laugh long since abandoned once things got complicated. As they sat at the red light soaking up the rain and chuckles, he mentioned that it was "a dry rain", a joke created years before in the middle of a desert during a rare yet incredibly beautiful rain-turned-snow shower.

Her thoughts wandered back to a carefree kind of night where time, seemingly, stood still. A time when everything was easy and the biggest decisions were as simple as which club and what time. Sitting on a playground swing, talking for hours, laughing over the little things in life, the rain came and neither of them bothered to move. The conversation just kept right on going and, eventually, he kissed her in that rain storm.

Sunday, February 7, 2010

My Global Citizen

As I stood silently on the trail bathed in the light of a full moon, listening to the lines of a long forgotten story whose message is that sometimes you don't need words, all you need is hope, I was overwhelmed by the knowledge that despite the internal struggle and financial challenges I had faced and overcome a year or so ago, I had, indeed, done the right thing.

You may recall that I once wrote about the tough decision I made on how best to educate Exhibit B who, while incredibly bright, was what I refer to as "the forgotten" child in a typical classroom. These are kids who are quiet, smart and never cause a moment's trouble and, therefore, are often overlooked by less than stellar teachers. In the end, I decided to send him to The Fancy Schmancy School (TFSS) because the educational philosophy there was so closely in line with my own, it was as if I'd written it myself. I felt strongly he'd be able to shine brighter there than anywhere else. I knew in my heart of hearts, deep down, there was no other choice to be made. Still, it wasn't easy.

However, the fact is, I've not regretted the decision a bit, and there are many times, including standing on that trail holding my youngest in my arms with my other children snuggled up next to me, all four of us taking in the wonders of a moonlit hike, when I am simply overwhelmed with gratitude and joy about being able to offer this opportunity to Exhibit B. For him, it is perfection, and I've watched, with pride, as the child he is and always has been on the inside has suddenly emerged and is more evident than ever from the outside.

When disaster struck in Haiti, I immediately received an email from the school stating that the middle schoolers were forming a leadership committee to determine how the students of TFSS would respond. In the meantime, the fifth graders, having completed a unit on natural disasters in the spring of their fourth grade year, became the school "experts" to advise the various grade levels on ways in which they could support disaster relief efforts.

As a side note, that unit they did included a culminating activity of creating and then actually following a recipe that could be made only from products commonly found in a pantry that people trapped in their homes could make and eat. There was a lot more to it than that, but the photos and descriptions of this activities when I visited for open house last year impressed me greatly because of the incredible amount of curricular integration involved (which I would now need to refer to as transdisciplinary since it's an IB program). This unit alone was one of the deciding factors for me, but seeing what transpired over the past six weeks made me realize that these chidren understand that their studies go far beyond the acres and acres of land they call their learning community.

In the end, it was decided that the 1/2 classes would raise money by creating a "world marketplace", if you know much about PYP curriculum, you understand that this makes sense. They sold all kinds and sorts of goods, including "I Helped Haiti" bracelets, and made quite a bit of money to donate to disaster relief. It was an amazing joint effort by all grade levels and every decision made was made by the kids.

In the meantime, Exhibit B's class was doing some research for environmental science when they stumbled across this website: http://www.kiva.org/. When the teacher explained a little about it, one of the girls in Exhibit B's class raised her hand and said, "Are we going to do that?". That's all it took. The class was buzzing with excitement over this program and wanted to get involved. The teacher told them they could do it but that they needed to raise the money themselves. With that, this 4th/5th grade class devised a plan.

They would put on a talent show and invite the whole school & all the families. They would have a guitar case out for "tips" to donate. They would also offer face painting and crafts. They invited the local nature center to come in and promote a special program they have. The nature center folks were so pleased with the effort that they offered to bring an owl and snake with them and do some animal talks. The night would end with a hike through the campus trails (BYO Flashlights... and be darn sure you put red cellophane over it) followed by hot chocolate, for which there was a small fee, that went to Kiva, too. If by chance you forgot to bring your own mug, there was an upcharge, of course (did I mention this is a green school?). In the end, they raised $500. on the spot, and one of Exhibit B's very generous teachers made a matching donation.

And so it came to pass that one night, not too long ago, I hiked on dark trails and listened for the sound of barred owls and other creatures of the night and, all the while, reminded myself of the importance of listening to my soul.

Friday, February 5, 2010

Actions vs. Words

On a very regular basis, there are people in my kingdom who claim to love me the mostest, who tell me they wish they could take away my pain, that they want to take it on so that I don't suffer any longer, they wish they had to deal with that with which I deal instead of me having to deal with it.

It's a sweet sort of sentiment and it gives them words with which to fill the air. However...

I thought a lot about this today as I struggled to keep down my food or move my muscles and joints in any really meaningful way, while my hands shook so violently I had to ask for a straw for my coffee so I didn't spill it on myself and while I played the wait and see game for hours on end. I came to the conclusion that this particular declaration of "why not me instead?" is just a little bit selfish and that those who make this statement are playing the victim on some level.

Now I know that might sound crazy, and I certainly don't mean it in a disparaging way, but hear me out, because I think there's some merit to it. Let's be honest... they don't REALLY wish it was them, but it does sound good and heroic to mention it. Of course, since it's a physical impossibility, it's safe for them to say it as often and as adamantly as they would like. The fact is, it's a helluva lot easier to say something like this than to actually have to be around me, help me, support me. Actions speak far louder than words and I find it's the folks who proclaim my situation "utterly unfair" and who claim to want this trade out that tend not to act. And that's OK, I don't need them to, realy, and I know sometimes people just don't know what to say or do, but I do find it interesting.

These "traders" are not the same folks who remain silent about the situation yet are there to hold back my hair as I vomit for the 14th time in two hours. They are definitely not the ones holding my hand during a spinal tap or telling me jokes while I wait for the IV to drip its last drop, not the ones squeezing my hand to try to stop it from shaking, unlocking a door for me because I can't manage the key, delivering meals or cleaning ladies or providing me with Point A to B transportation on days when driving is out of the question. They are not the ones that know there's a standard answer I give to the question "how are you feeling?", nor are they the people who can watch me move across the room or see me touch my "hot spots" and know exactly what hurts me.

The fact is that this... this life I lead... this disease that haunts me... these powerful lessons I learn from it... this is my curriculum. It's not theirs to learn and even if they could wish it upon themselves it would be lost on them because it's simply not their destiny.

The real question, then, should be "What can I learn from the Cranky Princess' situation?" or, maybe better yet, "How can I step into the Cranky Princess' world?". Truthfully, what it comes down to is: are the people who care so deeply about me that they "wish" my illness upon themselves actually willing to give up their time and energy to DO something that would allow them to step into my story, to be a part of the plot, and thereby, hopefully, learn something from it, or are they just interested in the words that sound good and right in the moment?

At the end of the day, what you do is more important than what you say and sometimes that which is unsaid is heard more loudly and clearly than the words you utter.